Caregiver Experience During Advanced Chronic Illness and Last Year of Life

Abstract

Background/Objectives Caregivers of patients with serious illness endure significant burden, yet it is not clear at what stage of advanced illness patient and caregiver needs are greatest. This study compared prevalence and predictors of caregiver esteem and burden during two different stages of patients’ illnesses – advanced chronic illness and the last year of life. Design Longitudinal, observational cohort study. Setting Community sample recruited from outpatient clinics at Duke University and Durham VA Medical Centers. Participants Patients living with advanced cancer, congestive heart failure, or chronic obstructive pulmonary disease and their primary caregiver, retrospectively coded as chronic-illness (n=62) or end-of-life (n=62) patient-caregiver dyads. Measurements We measured caregiver experience monthly with the Caregiver Reaction Assessment (CRA), which includes caregiver esteem and 4 domains of burden: schedule, health, family, and finances. Results During both chronic-illness and end-of-life, high caregiver esteem was almost universal (95%); health, family, and financial burden were endorsed by <25% of the sample. Schedule burden was the most prevalent form of burden and was experienced more frequently by end-of-life caregivers (58%) than the chronic-illness caregivers (32%). Caregiver esteem and all dimensions of burden were relatively stable over one year. Few factors were associated with burden. Conclusion Caregiver experience is relatively stable over one year and similar among caregivers of patients in the last year of life and those further upstream in advanced illness. Schedule burden stands out as most prevalent and variable among dimensions of experience. Because prevalence of burden is not specific to stage of illness and is relatively stable over time, multidisciplinary healthcare teams should assess caregiver burden and refer burdened caregivers to supportive resources early in the course of chronic illness.

Measuring carer burden in informal carers of patients with long-term conditions

“…Burton et al (2012) found no difference in burden levels between carers of people with different conditions. The lack of support was most strongly associated with burden which differs significantly from a HF study reviewed (Makdessi et al, 2011) and later a prospective study of multiple conditions, in which schedule disruption was the most prevalent mediator of burden (Sautter et al, 2014).…”

Cuidados paliativos oncológicos em contexto de internamento e domiciliário: Necessidades, morbilidade psicológica e luto antecipatório nos familiares do doente terminal e impacto na qualidade de vida familiar

“…Dada a complexidade deste papel, a maioria dos estudos aponta que os cuidadores carecem de ajuda na prestação de cuidados, partilhando a tarefa com os profissionais de saúde e/ou familiares, o que viabiliza o "respiro" do cuidador (Stajduhar & Cohen, 2009). No entanto, na maioria das vezes, a prestação de cuidados é levada a cabo apenas por um membro da família -cuidador principal -que, em muitos casos, se sente isolado e abandonado pelos restantes membros da família e amigos o que, naturalmente, compromete a partilha das tarefas associadas à prestação de cuidados (Wittenberg-Lyles, Demiris, Oliver, & Burt, 2011) e o coloca em especial risco de exaustão física e psicológica (Sautter et al, 2014).…”

Carga de la enfermedad crónica para los sujetos implicados en el cuidado

“…La alta dedicación en horas del cuidado al día, disminuye en el nivel de salud [25,26], situación que se agrava cuando se reside con el receptor de cuidados [27] y cuando este presenta alta dependencia [28,29] pues esto implica mayor dedicación al cuidado directo. Una alta dedicación al cuidado físico, se asocia con mayor prevalencia de síntomas como el dolor [30] y aparición de enfermedades en el cuidador.…”